ALS Advocacy

Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, May 16, 2012

Your Opinions Are Valued!

ALS is not reported to health departments as cancers and many communicable diseases are. Before 2008 when the ALS Registry Act was passed, patients' clues were buried with them. The National ALS Registry changed that.

A bright and hard-working gentleman with ALS serves on an advisory panel for the National ALS Registry. They made a wise choice in selecting him to represent the perspectives of people with ALS. Below is a message from him for all people with ALS. Please pass this request along to anyone you may know who has ALS. He will appreciate your help. Thank you.

Please help. Late next month, I will be serving as a panelist with the National ALS Registry team with the ATSDR / CDC for the 3rd time, as a PALS representative. I have been asked to give about a 15 minute presentation on PALS’ perception of the Registry and especially to discuss ways to reach out to all PALS.I have prepared a simple 10-question survey aimed at PALS' awareness of the Registry, on my own, located at the following weblink:www.surveymonkey.com/s/CYF8ZW2I'd like to get as many responses as possible from PALS (or CALS on their behalf). The target respondents are American PALS (or CALS). Please only one response per PALS (no need for PALS and CALS pairs to both respond. Also, excluded are CALS of PALS who died before October 2010, since they could not register.Responses are 100% anonymous. Please respond whether or not you have registered and whether or not you are satisfied with the Registry (to prevent selection bias).Thanks in advance!!!